Is anyone on the waiting list for preventive mastectomy due to having the BRAC1

Hi Girlpowerx, sorry to hear you have been waiting so long. I had my PBM with under the muscle implants back at the end of 2015 at the age of  37. This was about 18 months after getting a referral from my GP/Genetic Councillor and my operation was at the Royal Marsden. I can only assume that the COVID pandemic is affecting the waiting times?

Just wondering was your Breat Care appointment at the same hospital as your clinical psychologist appointment will be?

If I remember rightly it was probably around 6 months after my clinical psychology I think that I finally had my op.

I now live in Yorkshire and spoke to my genetic councillor about 8-10 months ago to ask for my referral to a gynaecologist in Leeds to dicsuss my oopherectomy and have yet to hear anything at all, I think the wait lists are just so much longer now and most likely those with cancer diagnosises are being prioritised for now.

Hold on in there, you are in the system at least and don't hesitate to contact your genetic councillor for a chat also to help you get through this waiting period.

This is the first port of call for me.

Does anyone know when the Marsden would have routinely started doing the BRAC gene test on breast cancer patients , especially for those with mothers who had breast cancer too. Would it have been around year 2000?

Hi Hamish2,

I would contact The Marsden directly to query their in house procedures on diagnosis of BC.

After a quick Google search I found this...

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.nice.org.uk/guidance/cg164/evidence/full-guideline-190130941&ved=2ahUKEwj6kJC0pbf7AhWdQEEAHRd8BkAQFnoECCwQAQ&usg=AOvVaw1hyMdz6ZdKHZcykNVZPhzS

If you skip along to page 106 "6.4 Genetic testing for BRCA1, BRCA2 and TP53 within 4 weeks of diagnosis of breast cancer. "

That shows the NICE review and guidelines from 2013. No idea if this has changed since, will probably need more research.

This is a 2013 review, so I would hesitate a guess that it is unlikely a BRCA test would have been done as standard back in 2000. However depending on the oncologist and where you are accessing your treatment maybe they were starting to ask patients to review their familial history and seek a separate investigation into the possibility of a mutation in their family?

This is what happened to my Mum back in 2008 following BC treatment and only on her final meeting with her oncologist. Almost as a footnote. It then took us 2 years to get through the system via our GP and then the local Genetic Councillors at Leicester Royal Infimary/University Hospital. As I understand it Dr Barwell who helped us traverse this journey was at the forefront of research in this field at that time. I've seen him on the news since when they've needed an expert on to discuss the subject.

Hi to get tested for being brac1 you can go to your GP if you have had a first class relative you will be entitled to this on the NHS. My mum passed away 25 years ago they did it from a sample of her tissue they kept. And I tested postive for brac1. I Was waiting for preventive masectomy for 2 years and recently got diagnosed with triple negative BC. 

Where was the best information about the gene’s,  treatments and preventatives. How did you find out about it? 

I went to my doctors and told them my family history. Which was mum being under 40 when she got breast cancer. And I could possibly be at risk of having the BRAC1 gene. So they referred me for a blood test and it turned out positive. From this result they guide you on what you might want to do. 

I’m 40 and just had an emergency referral sent to the breast cancer clinic, I have had an ovarian cyst diagnosed in 2019 been monitored for growth but then ruptured so is not a tumor. I had a penal cyst diagnosed in 2015 which has not increased on the last check but all these findings have been terrifying and now a referral like this. Last august I was also told there was a mass most likely a cyst again in my liver. I now have swollen or what they call reactive nodes. I don’t feel treatment has been explained to me and when calling the appointments line I was actually hung up on when I said you can’t do anything about the delays, she replied sorry it’s not good enough and hung up. I then rang back the clinic and am still waiting from the appointment line who sounds like the same girl I speak to to everything 

I think take it one step at a time. Especially when there's so much going on with different health issues. The worst thing is the wait once I new my results I felt like I could just get on with the treatment. You shouldn't be waiting more then 2 weeks if they have sent an emergency referral 

Thanks, I expect I will hear from them soon.